Why There Are No Superheroes in Dementialand

Tuesday was National Superhero Day. There’s a day for everything, right? Pancake Day, Oyster Day, Star Wars Day.

Superhero Day got me thinking in a way that National Frozen Food Day, Johnny Appleseed Day, and Goddess of Fertility Day did not. (However, National Frozen Food Day did make me crave frozen French toast sticks and tater tots.)

I’ve been thinking about how I don’t believe in superheroes, and I take issue when people call other people superheros.

I have a friend who is pretty impressive. She gets up every morning at 4 and runs 6-10 miles. Then she works all day. At night, she teaches a couple of yoga classes. She’s kind, funny, and humble. I don’t know how she does it. I’ve heard a lot of people say she must be a superhero.

But saying she’s a superhero doesn’t do her justice. Superheroes have special powers. They have capabilities that the rest of us don’t have. That means superheroes aren’t really that inspiring or impressive. My friend doesn’t have any special powers. She does what she does because she chooses to rather than because she’s some special breed. I think that’s more powerful than having some sort of superpower status.

I’m not inspired to go out and fight crime in my community because a superhero does it. I might be more inspired if a real person did it. To me, real people doing impressive things are infinitely more amazing than superheroes.

I am in awe of some of the dementia caregivers I have met. They are family members, friends, neighbors. They never sought out the caregiving role. It wasn’t a job they applied for and it wasn’t a path they chose, but they do the best they can.

It’s a guy who plays Uno with his wife for hours even though she doesn’t remember the rules and they are basically pushing cards around on the table aimlessly. And it’s not a burden to him. He loves every minute of it and knows someday he’ll cherish this time spent together.

It’s a woman who patiently answers the same question over and over when her husband with Alzheimer’s asks it …again…again…and again. And, amazingly, she answers in the exact same tone of voice the first time and the thirteenth time.

It’s a daughter who knows her mom’s medical record like the back of her hand. She organized and systematic in caregiving. When her mom is hospitalized and a medication mistake is made, she’s quick to correct it.

And I’ve often mistaken some people with dementia for superheroes. I know people in the earlier stages of dementia who do public speaking, sit on panels, and write books. I am in awe of them for the courage they show in times of uncertainly. They put themselves out there despite their own fears. They help me learn things about dementia that I could learn in no other way. They are making more of a difference than they realize.

A couple of days after September 11, 2001, I heard something that has stuck with me. When there is a disaster or a tragedy, you will see good-hearted, kind, and giving people stepping up to the plate. You have to look for those people and notice that positivity or your spirit can be destroyed by witnessing the devastation. And I was amazed (and continue to be amazed) at the good that 9/11 brought out in people.

But all those people sifting through debris at the World Trade Center? They weren’t superheroes. They were ordinary people stepping up to the plate in extraordinary ways. They were real. And I don’t think we can fully appreciate their actions unless we understand that they were real people with friends, families, strengths, vulnerabilities, fears, and favorite TV shows.

I feel the same way about some of the people I’ve met in the dementia community. They step up to the plate in times of struggle and tragedy. I remember having a conversation with the son of a middle-aged woman who had dementia. He had changed his work schedule to work third shift so that he could stay with his mom while his father worked during the day. He and his father had worked out this plan to delay placing his mother in a memory care unit.

When I was speaking with this guy after a support group meeting, I noticed a woman standing nearby eavesdropping on our conversation. Finally, she jumped in and said, “Wow. You sound like Superman.”

The man made some jokes about how no one had ever seen Superman and him in the same room. Then he pointed out that he was in no way a superhero. In fact, he was sleep-deprived son who was just trying not to screw everything up. He said that some of his days with his mom were epic disasters, but he kept thinking about how he could do better–and he kept showing up.

He told us that a few weeks ago he had forgotten to get gas and found himself stranded and embarrassed on the interstate…with his mom in the passenger seat. And a good day was when he had time to grab matching socks. He confided that he had no idea how much longer he could do this. He said that he often wondered if he needed to be on anti-depressant and he really wanted to start going to church again but Sundays were his only day to sleep in.

It’s only after I hear about the real struggles of caregivers that I appreciate what they do.

Superheroes don’t impress me. Real people do.

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